Happy 2nd Birthday to me!!
Some of you may know who I am or who I used to be- you may have known me before my Multiple Myeloma days, or perhaps you may have gotten to know me following my diagnosis. I’ve been given the bonus of slowing down and smelling the roses and my thoughts wander because now they have the time to wander. I think of people I don't know who are in my situation and may not be as fortunate as I am, dealing with tremendous struggles far, far beyond my world - Do they have a great family, friends and health care support? Do they have insurance, and can they meet their financial responsibilities? How are they coping with how their children are coping? But that’s not a part of my world I can control.
My thoughts wander to you - I think if you live far away, I wish I could see you more. I do think about what my life would be like had the myeloma not been part of me. I would take a plane to visit my friends, my family, to have lunch and catch up. I would drive many miles to have reunions that would lead to great conversation and memories. We would have tea, drink wine, vodka, eat amazing food, and there would be on-going laughter. It would be wonderful if I could be as independent, spontaneous, and active as I used to be. To be sure, the covid-19 crisis put a hamper on my ability to be active in the world, and I know it has brought things to a screeching halt for many of you.
Fortunately, all the things I miss today, are around the corner. There is much to look forward to. My fatigue will lesson over time - I just need to be patient, and that has been difficult for me. A bone biopsy is nothing compared to what I have grown to understand about my real-life limitations. I honestly have nothing to complain about because I am improving, my blood cells and bone marrow are talking and working together to keep me healthy. When it’s time, my body knows how to “stop me on a dime” so I can recharge. Adjust and move on. I've started my vaccines and should finish by this time next year - I've had 3 Covid tests, all negative - people like me are more vulnerable to all viruses and this summer, there are many of those to go around.
Now that I have established a relationship and have become comfortable with my City of Hope team, I don’t restrain myself so much anymore with the medical staff or my doctor, or any doctor. Now I have a great awareness that my agenda is as important as my doctor’s and, I don’t just answer only what I am asked. Let’s face it, for us norms not in the medical field, it’s easy to be intimidated and let “those in the know” take control. I am now engineering how I can satisfy my agenda while still respecting the knowledge and experience of those on my medical team. My doctor and I have quite different personalities and we are learning how to correspond with each other in a more effective manner. Since we will have a long-standing relationship, this is important. We talk about everything on her list and mine – my list is simpler but has taken the forefront and is now the guide for most of our decisions. She is one smart cookie, still the boss and talks way over my head. However, now I’m not afraid to say “yeah, you’re talking way over my head.”
I know I don’t have to explain my situation to my friends, my family – the people in my life who have really lifted my spirits. My heart carries a permanent fingerprint from all of your support, thoughts and messages of hope. But, It has been a long time and today I am at +365 days from my Stem Cell Transplant and it is my 2nd birthday!! So, as I celebrate, I thought this was a perfect opportunity to give you an update on ME!!
And, by the way - welcome to the world of people like me. Wearing a mask, staying away from crowds, and washing your hands a billion times a day. Now you know. I have to say, it’s nice not to be the only person in the grocery store wearing a mask!
Sending you all love and a big KJ hug.
Always be willing to express affection – no matter the circumstances. A hug is the best gift and shows love words fail to describe.
To anyone with the Schmel genes - We are unique, we have the best sense of humor, we are strong and we love. Kathryn, Bald is beautiful, it runs in the family.
New Hampshire Girls and my card giving friends - your words encourage, inspire and make me feel all warm inside.